Blog Archives

Isn’t it amazing how music can capture a feeling or a point in time during your life? It can motivate, soothe, energize, create memories, create joy. I think it’s one of the most powerful things we have in our world – because it speaks to us in different ways and we tend to be very unique in what we like and how it moves us. I’m a huge music fan: I love to listen to it, obviously, but I also love going to concerts and discovering new things out there in the music world. My car is practically overrun with all my music CDs – and yes, I prefer my music experience to be a tactile one, don’t @ me. It’s important to me. “What does this have to do with CHDs?” you might be thinking. Well I want to talk to you specifically about a song that has resonated a lot with me lately.

Let me introduce you to John Mark McMillan:

This dude is an incredible musician and songwriter. You most likely know him as the guy who wrote “How He Loves,” but he has a ton of other fantastic songs. The funny thing is my discovery of his music really coincided with the beginning of my journey as a Heart Dad. I can speak to several times during Nolan’s recoveries – or just life in general – where his songs like “Holy Ghost” or “Mercury & Lightning” seem to perfectly capture my current feels/hopes/struggles. Seriously, he’s a fantastic songwriter and you need to check him out. But this isn’t just a mere shoutout as a fan, I want to focus on a song off his album Borderland, which is called “Love At The End.”

Now I’m not gonna speak for Mr. McMillan about what this song is actually about (feel free to hit me up if I’m totally off-base, man!), but I can speak to what it means to me. Specifically I want to talk about the lyrics that say, “I’m on the brink / But I found love at the end of the world.”

This album is full of amazing songs and I love this one, too, but lately that part of the song has really stuck out to me. As of this post, it’s Congenital Heart Defect Awareness Week, where I – and others like me – do our best to make the world aware of CHDs and their impact on the lives of children, adults, and parents. One of the things that comes along with CHD Week – at least for me – is a lot of trips down memory lane, which can be hard. You tend to be reminded how it felt when you found out your son would be born with half a heart, or how he looked post-surgery with his chest open, hooked up to all those tubes and wires. You remember all those struggles and how scared it all made you feel.

It feels almost like the end of the world. You face a thing that shouldn’t be: kids shouldn’t get sick, they should have surgeries, they shouldn’t be in pain. But here you are. You’re thrust into the medical word with all its bells and beeps and jargon and acronyms, you’re doing your best to make ends meet, to afford the meds, to make one more call to the insurance company. All this while life continues to move along without you – you might lose friends, might lose family, might lose opportunities. The end of the world, as you previously knew it.

John Mark McMillan’s song serves as a reminder that while we’ve seemingly hit the end of the world, and we’re scratching and clawing our way into some sense or normalcy, a tremendous amount of love lives there: your Heart Kid. I love all my kids, I’m their dad and proud of it, and I love them all equally. The amazing thing about Nolan being born, though, was that his experience seemed to unlocked some kind of other level of love that I didn’t know what there. Have you felt the same way? I hope you have! I feel like throughout this crazy, difficult journey, I feel like I’ve learned to love bigger, if that makes any sense.

That makes every hug even more epic, every accomplishment one to really celebrate, and every moment a valuable one. In spite of all the horrific things I’ve seen my son go through, I still managed to find love there, at the end of the world.

I know that this life is a hard one for us and our kids and that you’re out there doing your best – and shout out to you for that – but when it really feels like you’re about to lose it, maybe remember how you found love at the end of the world. It’ll show you that you are indeed strong, capable, and you’re not done yet. Stay strong, Heart Fam, and enjoy John Mark McMillan’s “Love At The End”:

I’ve been where you are…the glazed look in your eyes, the nearly zombie-like foot shuffle, the Lord-knows-how-old crust on your t-shirt. You’re the dad who is on day 4 in the hospital after your child’s most recent heart surgery. I see you standing in the cafeteria, meal ticket in hand thinking, “If I eat another chicken salad sub, I’m gonna lose my freakin’ mind.” Dude, I’ve been you. Now that I work at a hospital, I see you guys all the time…I call these parents “ghosts upon the earth,” since you get to this crazy place where you exist but you kinda don’t…you’re just floating through the motions until you get to safely take your child home and it’s like someone gave your body back to you at the front door. Well guys, this post is for you…whether you’re shuffling through the hospital or doing it at home. I know this life is a challenging one but we have to remember to take care of ourselves! Obviously our little heart warriors get a lot of attention…they need that attention. There’s meds to be given, tube feeds to administer, appointments to attend, and futures to fret over. The reality, though, is we’re killing ourselves with stress.

There’s been a big shift in healthcare towards more holistic styles of healing – or integrative therapies, as they’re sometimes called. But before you write me off as some kind of hippie, please hear me out. Mainstream healthcare is slowly getting on board with the idea that some of these more non-traditional therapies can actually be very helpful in the big picture. To be honest with you, they weren’t anything I ever put much thought to until about the last year or so. My job has exposed me to several of these therapies and I have to say they’re a great thing for the healthcare system and for us as heart parents. So here’s a few:

Healing Touch

Is it massage? Is it chiropractics? Is it weird? Nah. To be honest with you, I am far from being an expert in healing touch because I don’t completely understand it.

According to the Healing Touch Program website, “Healing Touch is an energy therapy in which practitioners consciously use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health. Healing Touch is a biofield (magnetic field around the body) therapy that is an energy-based approach to health and healing.”

Now before you get all like “That’s some voodoo, bruh!” Hear me out. I’ve tried healing touch twice and whether or not the results were all in my head, I have to say it worked splendidly. We recently had some healing touch practitioners at work and I sat down for a 10-minute “centering exercise” as they called it. Basically I saw in a chair and the practitioner put her hands gently on my head, neck, and shoulders. All the while I was encouraged to breathe and listen to some soothing sounds on a radio. After 10 minutes I felt completely relaxed, completely focused, and very rested. Still can’t explain it, but I felt like a million bucks.

The good thing is a lot of hospital employees are going through classes to become healing touch practitioners, so ask around and see if someone can come to you and even do 10 minutes of healing touch. You will feel the stress melt away, I promise it’s worth the time. It’s non-invasive, you don’t have to take any meds, so the only thing you have to lose is a little time.

Aromatherapy

For a lot of people, “aromatherapy” means heading down to Bath & Body Works and buying a lotion that smells like a beach. Not true. I bet if you spent 45 seconds on your facebook timeline, you’ll find someone who is all about their essential oils. It’s like the next big thing. The reality, however, is that aromatherapy is nothing new.

Think about it, way back in the day before people were able to pop a tylenol or apply Head-On directly to the forehead, people used a lot of different ways to heal using what was readily available to them. Often this was plants and oils. Fast-forward to today and those same oils are becoming very popular as people seek ways to heal without medicine or invasive procedures.

I learned about aromatherapy about a year ago at an integrative therapy educational session at work and thought it was pretty awesome. It’s amazing how you can just basically put a cotton ball in a little cup, add a few drops of essential oils to it, put it next to you on your desk and really get your heal on. For example: stress got you feeling nauseated? Use some ginger essential oil, which settles the digestive system and stimulates appetite. Sound like bunk? One day I was feeling extremely sick to my stomach at work and needed to stick through it to work a particular event. I sat at my desk with some ginger essential oil and felt better in no time. It was pretty awesome.

There’s so many great uses for aromatherapy and I encourage you to research them more on your own. Look into things like Bergamot, which is an antidepressant, or Lavender, which – when mixed with vanilla – can help reduce fear and anxiety prior to medical procedures…hint hint.

Just…Breathe

When I was in college I took a lot of psychology classes and I’ll never forget one professor who taught us about breathing exercises to reduce stress. She said “If you’re waiting on that big job interview one day and you’re freaking out, just close your eyes, take a deep breath through your nose and release slowly through your mouth.” I’ll never forget it because it works. Taking a few moments to focus on your breathing can really help relax you and relieve some stress.

An exercise that I found works great is to breathe in slowly through your nose, counting to 4. Then hold it for 2 or 3 seconds and release slowly through your mouth for another count of 4. If you close your eyes and do this a couple times, you’ll be amazed how relaxed you can feel. The best thing is you can do breathing exercises wherever you are: in your office, at home, at the hospital, in the car (don’t close your eyes for this one). And again, no meds involved in helping you feel better.

Anyone who knows me knows that I am pretty obsessed with music. Gotta have music when I drive, sometimes I’ll put Pandora on and let the kids dance around, I love concerts. Music is a powerful thing.

Think about it: you listen to that one song that reminds you of a person or place in time and it’s like it brings you right back. There is music that can bring you happy thoughts and memories and there is music that can calm…I know everyone has that song or songs that can calm them down.

More recently a lot of work has been going into studying the effect of music on the human brain. I’m sure by now we’ve all seen the video of the old man in a nursing home who can’t even remember his own daughter, but when they play his favorite music, he sings and becomes far more responsive than he was. Music has been shown to unlock memories that sometimes we think have been lost, whether that’s through time or illness.

So I encourage you to take that time and let music set you free. If you’re going for a hospital stay, pack some music with you on an mp3 player. If you can’t do that, step away for a few minutes, lock yourself in your car, and listen to some music. It’ll be like a nice re-set for your mind.

Get a Hobby Already

Work work appointments work appointments clean up barf work work appointments laundry dishes cooking work work clean poop work. That’s life, right? We run ourselves into the ground doing things that – while important – are depleting our energy and we don’t make time for ourselves. Get…a…hobby. It’s not a selfish thing to do. It can be anything: play basketball, learn an instrument, collect stamps, learn to breakdance, master the unicycle. Whatever, just do it. If you know me, you also know that my addiction to coffee is right up there with my obsession with music. For the last few months I’ve begun roasting my own coffee beans at home using a popcorn popper. I order the beans raw from a supplier, and when I want some coffee, I take my popcorn popper outside, roast the beans, and the next morning I can grind up some super-fresh coffee. You just can’t get it any fresher! And it makes a world of difference…plus the roasting process makes your clothes smell AMAZING. I really enjoy the process of roasting coffee…it just makes me very happy, and when I drink a fresh cup and it tastes good, I feel very accomplished. And as weird as it sounds, I really enjoy just watching those beans spinning around in the popper, turning from green to brown. It’s a relaxing sight.

A hobby is a much better relaxing activity than sitting around binge-watching shows on Netflix (though that can be fun too) because it stimulates a level of creativity and provides a nice level of self-esteem. And I don’t know about you, but that sounds like a really great thing.

But Wait, There’s More

I could go on and on with all of these self-care ideas, but I don’t want to make you cross-eyed: so I encourage you to do some more research on the interwebs about things to help you relieve stress and relax. Look into things like mindfulness and guided imagery. Maybe acupuncture is for you. I know the life of a heart parent, heck ANY parent, is a stressful one. I’m not saying you shouldn’t be concerned about things. But for right now, you are your child’s best advocate and their companion along this long journey. The reality is, if you don’t stop and take care of yourself, you’re going to break down, you’re going to get sick, or worse. Don’t let your heart warrior go at it alone. Give yourself all the best shot of success by taking time out for you.

One of my hobbies is photography: it’s just something I love to do. I had the great opportunity to join the photography team at my church as a volunteer, which I REALLY loved. It gave me an opportunity to have free reign of the place, to wander around and capture some great images. Of course, with the birth of the twins, all photography activities were on hold.

In February, however, I received an email from the photography coordinator that there was an upcoming event at our church mid-week called Code Orange Underground. This was an invite-only special event for church volunteers and leaders. The coolest part of it is that you never know what will happen that night, it’s always a surprise. Sometimes it’s guest speakers. Sometimes it’s bands. You never know. I talked with my wife and she said it would actually be a good idea for me to do it: I had the day off work (can’t remember why exactly) so I could go see Nolan much earlier than I usually do, and would have time in the evening to go to church. So I signed up and got the ok to shoot for the event.

I spent the earlier part of the day visiting Nolan, which was really nice: he was very happy and playing with some of the toys that the staff brought to him. At night I loaded up my equipment and headed for church, which was PACKED. I got there early for the sound check to find out that the surprise guest for the evening was none other than well-known worship leader Matt Redman! I was very excited because Matt wrote and performed a song called “Never Once” that has resonated so much with me before, during, and after Nolan was born. The lyrics say, “Never once did we ever walk alone, never once did you leave us on our own. You are faithful, God you are faithful.” TRUTH. And it was a truth I constantly needed when I was down or when things got tough. We sang it a lot in church and I was hoping he’d sing it that night. Here’s the song if you want to hear it: http://www.youtube.com/watch?v=722zPX1npcA

So the night was an awesome one, though there were way too many people there and a bit too many photographers. But I still enjoyed the opportunity to break from my little routine and do something I loved. And yes, Matt did perform “Never Once” and it was amazing…I just put the camera down and joined everyone else in worship. I was really blessed to be there. As a heart dad, I think it’s important to know your responsibilities, but it’s also important to remember that you’re only human. And you need to take some time to do the things you love, even though your life and your schedule will be crazy. If you ignore those things you will lose your mind and become just like your schedule: crazy.